This is another letter to one of my doctors that I want to share.
Despite the fact that writing has been a real struggle, I need to relay to you some important details that may convince you to believe that I'm in a distressful situation.
When I met with my neurologist in November, it was a comfort to finally hear from him that my spinal cord is what's causing my difficulty breathing. If I was right, he was sympathetic. When I told him that my hands aren't paralyzed yet. He told me it didn't matter.
Losing the ability to breathe is notoriously torturous than experiencing paralysis itself. Worried, I requested to see my neurologist earlier than our next scheduled January appointment. During our meeting I noticed that his opinion and demeanor changed from the previous meeting. I was disappointed that as if my breathing problem was being undermined. Then he raised his
hands shaking them and said, "You don't have so and so in your hands". I knew then that he received my medical records from the Chiari Institute.
hands shaking them and said, "You don't have so and so in your hands". I knew then that he received my medical records from the Chiari Institute.
My experiences even prior to my diagnosis in 2002, in my opinion, has always been caused by my spinal cord. Some people from an SM support group, my in-laws and others don't seem to believe why I have so many symptoms for someone with such a small syrinx. There are those who have syrinxes that go virtually the length of their spine before painful symptoms appear. Unlike me, who suffers from unrelenting pain from such a small syrinx.
My abdominal troubles started in 1995 when we lived in the Bay Area. Initially, it was slight bloating and spasms. In 1996, chest pains and esophageal spasms started. I had endoscopy and full GI work up. Findings were esophageal spasms of unknown etiology.
My abdominal troubles started in 1995 when we lived in the Bay Area. Initially, it was slight bloating and spasms. In 1996, chest pains and esophageal spasms started. I had endoscopy and full GI work up. Findings were esophageal spasms of unknown etiology.
We moved to the North Bay in 1998. There, weird, serious troubles began. The stomach pains flared up into a full blown crisis. Unendurable stomach pains were an everyday ordeal. As soon as food touches my stomach the pain was indescribable. When I sat, it would cause my stomach to bloat and be even more painful. It was tormenting! I took a lot of time off work and was called a hypochondriac by coworkers. My insistence to have an exploratory laparoscopy somewhat paid off when doctors found out that the inside of my stomach was full of "spaghetti" like adhesions. Again, from an unknown cause. According to my doctor my uterus was covered with adhesions. They scraped all the adhesions. I had hoped that those were the cause of my pain. I was looking forward
to some painless days ahead, but my excitement was short lived
when the pain was back in a few days and then somewhat came back with a vengeance. The pressure and pain in my bladder area that has been there since I was 17 felt like it couldn't hold anymore, that it's finally going to fall. The pain in my buttocks/lower back made my buttocks feel like it was a shattered mirror. (laying on it made it even worse) The nerves from my lower back, down to the
back of my legs feel like they're being pulled, stretched or they feel short that I had to avoid bending at all times because of the pain, that when I did, my day would be over. I would need to be in bed after. Compression on any part of my back, even the back of my legs would cut circulation especially to my legs and feet. Walking and standing became very limited. I had my first lumbar epidural in 1999 at UCSF Pain Management Clinic.
to some painless days ahead, but my excitement was short lived
when the pain was back in a few days and then somewhat came back with a vengeance. The pressure and pain in my bladder area that has been there since I was 17 felt like it couldn't hold anymore, that it's finally going to fall. The pain in my buttocks/lower back made my buttocks feel like it was a shattered mirror. (laying on it made it even worse) The nerves from my lower back, down to the
back of my legs feel like they're being pulled, stretched or they feel short that I had to avoid bending at all times because of the pain, that when I did, my day would be over. I would need to be in bed after. Compression on any part of my back, even the back of my legs would cut circulation especially to my legs and feet. Walking and standing became very limited. I had my first lumbar epidural in 1999 at UCSF Pain Management Clinic.
The severe pressure and pain in my lower abdomen was the reason for my hysterectomy in 1999. I developed an infection from the
surgery which required me to rest a lot. As I was in bed one day, I
realized that my back was numb. As if my buttocks were glued to the bed. I felt fear. It seemed that I had been home too long so I was eager to go back to work. On my first day back in the office, I realized I couldn't sit. As if I was sitting on a bowling ball. It wasn't the first time that it happened but the pain on my bottom was excruciating and radiates to my stomach and to the deep muscles of my stomach wall in my mid back. Then the bloating occurred.
surgery which required me to rest a lot. As I was in bed one day, I
realized that my back was numb. As if my buttocks were glued to the bed. I felt fear. It seemed that I had been home too long so I was eager to go back to work. On my first day back in the office, I realized I couldn't sit. As if I was sitting on a bowling ball. It wasn't the first time that it happened but the pain on my bottom was excruciating and radiates to my stomach and to the deep muscles of my stomach wall in my mid back. Then the bloating occurred.
The hysterectomy didn't help at all. The pain came back with more intensity. I had this very deep pain that is out of this world on the left side of my stomach. I must have gone to the ER twenty times in the next two years and doctors would wonder where the pain was coming from. One doctor said there's nothing on the left side of my stomach. Come to find out later they were the deep muscles of my stomach. Later on they will be the the first group of muscles that will get paralyzed.
Again, I was forced to take time off work. We had gone to a number of doctors in the Bay Area that we thought might be able to help me. Each time the diagnosis was pain of unknown etiology.
Again, I was forced to take time off work. We had gone to a number of doctors in the Bay Area that we thought might be able to help me. Each time the diagnosis was pain of unknown etiology.
When we moved to Sacramento in 2001, I had a difficult time finding a new PCP because of my new symptom, dysphagia. No one has a logical diagnosis. One doctor said it's depression, the other asked me if my husband was treating me right, and another said it's just in my head. I found a good doctor at Mercy Hospital, Dr. Bayard Chang who was very caring and wanted to do everything to help me. At that point though, my condition was deteriorating fast. He referred me to a GI. I had another endoscopy and the Gastroenterologist wondered why I was having spasms in my esophagus. Dr. Chang later told me, what was throwing him off was the severe stomach pains. He couldn't make a proper diagnosis.
There were many ER visits from 2001 due to choking and difficulty
breathing. Once, we made pasta at home and during dinner I was
choking. My son administered first aid but it didn't help. He just received his driver's permit and he drove me to the ER. He was driving erratically since I was getting numb from the neck down. A cop started to follow us until we reached the emergency room. Another time while visiting Santa Cruz, the pharmacy was about a block away from where we were staying so I decided to take a walk in order to pick up my medicine. From breathing the cool air, I found it hard to breathe. I tried to ignore it but by the time I reached the pharmacy, someone called 911 after seeing my condition. Then one Fall season, Kev was upstairs when I was sweeping up leaves from our porch, from breathing the cold air and using my upper limb was causing me to have difficulty breathing. Next thing I know, my jaw locked to the left side of my face and I was struggling to breathe so Kev had to call for help. One more occurrence and I will stop because I could go on and on to no end.
My friend came to visit and we went shopping. From using my
upper limbs moving those hangers while shopping, I started to feel
really sick and had difficulty breathing so I sat and waited for her. I didn't say anything to her but when we reached home I passed out. Again, we found ourselves at the hospital. Ever since I've been spared from shopping. Thank God! My favorite of all was grocery shopping because I love to cook but I have to avoid that too because just by picking up things from shelves would cause my chest muscles to tighten and be extremely painful, then it's hard to breathe. In 2009 I requested for help because using my arms especially doing laundry, dusting or anything with repetitive motion of the arms causes difficulty breathing.
breathing. Once, we made pasta at home and during dinner I was
choking. My son administered first aid but it didn't help. He just received his driver's permit and he drove me to the ER. He was driving erratically since I was getting numb from the neck down. A cop started to follow us until we reached the emergency room. Another time while visiting Santa Cruz, the pharmacy was about a block away from where we were staying so I decided to take a walk in order to pick up my medicine. From breathing the cool air, I found it hard to breathe. I tried to ignore it but by the time I reached the pharmacy, someone called 911 after seeing my condition. Then one Fall season, Kev was upstairs when I was sweeping up leaves from our porch, from breathing the cold air and using my upper limb was causing me to have difficulty breathing. Next thing I know, my jaw locked to the left side of my face and I was struggling to breathe so Kev had to call for help. One more occurrence and I will stop because I could go on and on to no end.
My friend came to visit and we went shopping. From using my
upper limbs moving those hangers while shopping, I started to feel
really sick and had difficulty breathing so I sat and waited for her. I didn't say anything to her but when we reached home I passed out. Again, we found ourselves at the hospital. Ever since I've been spared from shopping. Thank God! My favorite of all was grocery shopping because I love to cook but I have to avoid that too because just by picking up things from shelves would cause my chest muscles to tighten and be extremely painful, then it's hard to breathe. In 2009 I requested for help because using my arms especially doing laundry, dusting or anything with repetitive motion of the arms causes difficulty breathing.
Going back to 2001, my limbs were too weak at that point, walking was too difficult. Using a cane to walk helped but holding it was a different problem. It hurt my upper limbs and the root of my arms and hands just holding it. Swallowing even the tiniest solid food
was almost impossible. It felt like it was stuck in my throat for
days. In my experience, each time I slept on my spine, it was
worse. I can't even swallow water.
was almost impossible. It felt like it was stuck in my throat for
days. In my experience, each time I slept on my spine, it was
worse. I can't even swallow water.
In 1998, my whole back, including my buttocks and back of my legs had been ravaged by Syringomyelia. In 2007 I remember asking my Neurologist if I can have a brace for my torso because I felt that my torso cannot support me. My body just wanted to lie down. It was like someone was pushing me down from my shoulders. When I carried something, the pain shoots up to my neck and the sides of my head. I had ataxia. I remember my Mom told me to walk straight and didn't like the fact that I was limping. I cried because I wished I didn't have to walk. It was terrifying to walk. Each time I took a step, I had this excruciating pain on the left side of my back but no one can tell where the problem was but only I knew. Some people looked at my feet with a puzzled look because I was limping but nothing was obviously wrong. I saw two local Neurosurgeon who made me walk over and over but couldn't
figure out why I had a limp.
figure out why I had a limp.
I want to add here that as a young girl I always wondered why the muscle in between my right thumb and index finger would swell up whenever I helped my Mom in the kitchen especially with cooking and washing pots and pans. Whenever we traveled I didn't know where to place my right arm/hand because of the pain. I would always slide my hand under my thigh to put pressure and relieve the pain. I also want to add that I struggled in my classes in college. I was always taking remedial classes. I had A's in my practical subjects but where I needed to memorize I failed all the time even if I studied very well. I took Anatomy in the 80's twice and failed twice. I took it again after my decompression surgery thinking I was better but it was another fiasco.
In 2009, I requested help because using my arms would cause difficulty breathing. I did most things lying down. The
neurosurgeon who saw me at that time ordered 24 hour care for me and ergonomics. He told me to go to the ER if I can't control my BM. I'm sure that wouldn't have taken long if I allowed my
buttocks to be compacted.
neurosurgeon who saw me at that time ordered 24 hour care for me and ergonomics. He told me to go to the ER if I can't control my BM. I'm sure that wouldn't have taken long if I allowed my
buttocks to be compacted.
Back in 2004 during my first visit with you, my Karnofsky score was 70. The result of my EMG was an abnormal study. It indicated consistent with but not diagnostic of acute denervation on the right C7 nerve root. I strongly believe that there was no acute denervation due to the fact that I did everything I can not to sleep on my spine since 1998. I can tell you through my experience that even though those nerves aren't getting stimulation from the spinal cord, by avoiding compression, paralysis of those nerves are delayed although the symptoms remain. It doesn't take long for them to get paralyzed if they're compressed because they're like being strangled according to my Cardiologist Dr. Richard Shelton of UCDavis and my brother who is an Orthopedic surgeon. There's
an enormous difference between sleeping in supine than not when someone has a lesion. Please parse on these facts that I am informing you. They may not be in any medical book but please believe what I'm telling you, doctor. Please consider the fact that
I'm not the traditional case. If we wait for a positive EMG, it might not happen until I'm already passed. Many years back, when I slept on my spine, my arms were just like dangling, they have no power and compression of my buttocks causes my legs to be more excruciatingly painful than they already are and they have no power. I urinate even more, much harder to control it, Gastroparesis is worse, difficulty swallowing is worse and everything else is worse. At this time, I will not even try to compress the nerves in my back even for just thirty minutes. I've gone through it and will never be ready to go through that pain ever again! It's too much for me to bear. I would rather not live.
an enormous difference between sleeping in supine than not when someone has a lesion. Please parse on these facts that I am informing you. They may not be in any medical book but please believe what I'm telling you, doctor. Please consider the fact that
I'm not the traditional case. If we wait for a positive EMG, it might not happen until I'm already passed. Many years back, when I slept on my spine, my arms were just like dangling, they have no power and compression of my buttocks causes my legs to be more excruciatingly painful than they already are and they have no power. I urinate even more, much harder to control it, Gastroparesis is worse, difficulty swallowing is worse and everything else is worse. At this time, I will not even try to compress the nerves in my back even for just thirty minutes. I've gone through it and will never be ready to go through that pain ever again! It's too much for me to bear. I would rather not live.
My Neurologist said that there's no difference whether someone
sleeps on their side or on their spine. Having Syringomyelia, there's a HUGE DIFFERENCE! Last week, I called my Pulmonologist's clinic because I was having difficulty breathing and their advice:DO NOT SLEEP ON YOUR SPINE.
sleeps on their side or on their spine. Having Syringomyelia, there's a HUGE DIFFERENCE! Last week, I called my Pulmonologist's clinic because I was having difficulty breathing and their advice:DO NOT SLEEP ON YOUR SPINE.
In 2016, the left side of my chest was already stiff. The fast BPM's I associated it with the fact that I had difficulty breathing not from anxiety. I never had anxiety my whole life. At that time, any emotion caused me to have difficulty breathing, e.g. when our A/C turned off in the summer, immediately I couldn't breathe because my upper torso would heat up, when there are issues in our family, I cannot listen to it or I felt like I could die from not being able to breathe. At this time, I really need your understanding and I'm begging you to PLEASE BELIEVE ME! Both my right and left chest muscles are already stiff and numb. We don't have time to wait for a positive EMG. You would really HELP SAVE MY LIFE BY TELLING MY LOCAL DOCTOR THIS IS MY SPINAL
CORD ATTACKING ME. Again, I'm telling you I am an anomaly. By not sleeping in my back there is no acute paralysis and the symptoms from my limbs are depressed. The 2004 EMG should have given you a clue. By sleeping on my sides, the spinal cord hasn't been able to paralyze me completely that fast. It is
paralyzingly the nerves on the sides of my neck. Could that be the phrenic nerve?
CORD ATTACKING ME. Again, I'm telling you I am an anomaly. By not sleeping in my back there is no acute paralysis and the symptoms from my limbs are depressed. The 2004 EMG should have given you a clue. By sleeping on my sides, the spinal cord hasn't been able to paralyze me completely that fast. It is
paralyzingly the nerves on the sides of my neck. Could that be the phrenic nerve?
I can say it with confidence that if it hadn't been for me sleeping on my side, my limbs, torso and back would have been stiff and paralyzed a long time. I am positive that I have delayed paralysis of my limbs and my whole body from not sleeping in supine position. Although I have all the symptoms of quadriplegia. Starting in 2010, quadriparesis was so intense I felt that I could be paralyzed any day. In the Spring of 2010, paralysis of the muscles on the left side of my torso started. (I'm sure it would have been my whole torso and limbs if I allowed my spine to be compressed) With the help of Physical Therapists, they tried to help the muscles of my torso to relax. There were many therapies that I went to, including hydro therapy but to no avail. In the beginning, the muscles will relax after being massaged, but when I started to walk or sit, they become tensed immediately. The muscles in my torso felt like
being wrung and twisted. I don't know how to tell you how painful it is to have no sensation but to have agonizing pain. The pain was so severe that I used a rolling pin to press on my back. It was very cruel.
being wrung and twisted. I don't know how to tell you how painful it is to have no sensation but to have agonizing pain. The pain was so severe that I used a rolling pin to press on my back. It was very cruel.
And it is more cruel and more depressing that I cannot convince you to believe what I'm going through. I have been experiencing paralysis. It makes me very sad and frustrated that you don't believe what I've been telling you just because my EMG was normal. I'm fortunate that I can take high doses of Neurontin and I'm guilty of straining myself but this is not from overdoing, because if I do, why is it that now that I'm sleeping on my right side, my right side is going through paralysis? If you don't believe that this is the result of me avoiding compression of my back, what do you think happened to the abnormal EMG from 2004? It's still here and is lying in wait. I am extremely sad and this is all I think about to a point that it's making me angry. Doctor, this is my life. I could die
at home from respiratory failure and still no one believes me. My neurologist depends on what you say. My chest muscles are beingparalyzed now and I'm running out of time. I'm losing the ability to breathe. The pain is similar to what happened to the muscles in my torso. It is very very very painful, it is agonizing! There aren't words to describe this pain. Just a touch of my chest is excruciating. My chest area is full of tiny lymph glands that feel swollen and just touching it is excruciating. The muscles under my breasts feel like they're being pulled out from my body. The tightening of the muscles is agonizingly painful!! It makes you want to scream and cry but I have to avoid crying or be emotional because it makes it even harder to breathe.
at home from respiratory failure and still no one believes me. My neurologist depends on what you say. My chest muscles are beingparalyzed now and I'm running out of time. I'm losing the ability to breathe. The pain is similar to what happened to the muscles in my torso. It is very very very painful, it is agonizing! There aren't words to describe this pain. Just a touch of my chest is excruciating. My chest area is full of tiny lymph glands that feel swollen and just touching it is excruciating. The muscles under my breasts feel like they're being pulled out from my body. The tightening of the muscles is agonizingly painful!! It makes you want to scream and cry but I have to avoid crying or be emotional because it makes it even harder to breathe.
The weakness in my torso especially the middle part that radiates to my stomach and makes it difficult to stand up is back. The pain in my back especially the mid back, particularly the buttocks and shoots down the back of my legs is back. It's extremely painful. It
feels like the nerves in the back of my legs are short. The heart stopping pain on the left side of my stomach is coming back.I will never forget that in 2009 you said that I will experience paralysis in the spring of 2010. You were so accurate that in the summer of 2010 I started going to physical therapies to loosen the tight muscles in my torso. They would become extremely tight and right after PT, they would loosen up. But that was only in the beginning. Right after I would sit or walk, the tightness and pain came back immediately. The muscles felt like they were being wrung and twisted. The pain was unbearable! (I am attaching my picture from 2010 with this email.) Although these muscles didn't just deteriorate overnight. I had ataxia for many years. I went through paralysis with these muscles, quadratus lumborum and erector spinae group. I cannot describe to you the pain that I went through with these muscles. Now they're paralyzed. This is the reason why I lay down a lot. When Kev and I used to travel, I laid down in our flights. When riding in cars my view is the sky. (I
feels like the nerves in the back of my legs are short. The heart stopping pain on the left side of my stomach is coming back.I will never forget that in 2009 you said that I will experience paralysis in the spring of 2010. You were so accurate that in the summer of 2010 I started going to physical therapies to loosen the tight muscles in my torso. They would become extremely tight and right after PT, they would loosen up. But that was only in the beginning. Right after I would sit or walk, the tightness and pain came back immediately. The muscles felt like they were being wrung and twisted. The pain was unbearable! (I am attaching my picture from 2010 with this email.) Although these muscles didn't just deteriorate overnight. I had ataxia for many years. I went through paralysis with these muscles, quadratus lumborum and erector spinae group. I cannot describe to you the pain that I went through with these muscles. Now they're paralyzed. This is the reason why I lay down a lot. When Kev and I used to travel, I laid down in our flights. When riding in cars my view is the sky. (I
stopped driving in 2007) Now I lay in bed most of the day. Most things I do it lying down like using the phone, making grocery list, writing, reading, etc.
In 2011, your PA advised me to stop taking Neurontin. I couldn't function without Neurontin. Just the stomach pain alone, I need Neurontin. My torso was being paralyzed at that time. (attached is a picture from 2010) The pain was agonizing. Again, wether you believe it or not, I can assure you that because I refrained from compressing my back that I changed the course of my life. I'm sure I would have had a fully paralyzed back with stiff arms and legs, on a ventilator with tracheotomy and cannot see, talk or hear by now.
To be in a condition I was in prior to decompression, I feel fortunate that I still have my mobility. I have delayed paralysis by avoiding compression of my nerve roots. I know that you don't believe me and I'm being redundant here. Doctor, you probably think I'm weird but I'm being truthful to you. I know this because it is my experience. I am probably the only person with Syringomyelia that didn't sleep in supine position for 20 years. I am certain it is the reason why there is no acute denervation to my limbs and my paralysis is not acute. But you have to believe me doctor if I tell you it has been paralyzing me from the sides of my body. That was the reason why I told you in my previous email that it's like running away from paralysis. Every part of my body that gets compressed becomes stiff. In November 2017 I had to switch to my right side to sleep since my left side was mostly stiff and numb including my left chest. Even back in 2014, whenever I get emotional it was very difficult to breathe. I struggled from autonomic dysfunction. Whenever I woke up in the summer, I would feel shaky because it is hard to breathe whenever I felt warm. Later, whenever I was having any difficulties I struggle to breathe, I had palpitations and somehow it felt like it was affecting my heart. It was causing anxiety. (A report from my CT with bubble study was sent to you doctor.) Now, that I have been sleeping on my right side, most of my right side is stiff, predominantly my chest, upper back and shoulder. I'm experiencing paralysis on my chest muscles. It's extremely difficult to breathe without Gabapentin blocking the weakness. My right leg especially my thigh is spastic. I'm loosing power in my right leg including my right arm and hands. In order to use my right arm, I have to squeeze my right pectoral muscle because it is too painful.
I must tell you that I have temporarily eluded complete paralysis by not sleeping on my spine but I couldn't get away forever. Despite what I had done, this illness still has been trying to attack me in every angle. Sometimes I just want to give up and just sleep on my back but I will never do it unless I have no other choice. I remember my primary doctor in 2010 told me that if I stopped then that would be it. Now it's paralyzing both sides of my body. To sleep on my spine at this point is like committing suicide. It doesn't take long, when I lay on my back, it shuts off my breathing and so many other symptoms that I will never be ready to experience. Please doctor, don't think that it's just anxiety. I never had anxiety my whole life but when I have difficulty breathing, it's really scary and I get anxious. Although I haven't had a bad episode of tachycardia ever since I switched to sleeping on my right side. I was talking to my caregiver a few days ago not realizing my back was compressed on the reclined bed. I must have been in that position for about 30 min or so. Then I felt my back burning, I was struggling to breathe, the root of my arms from the back to my armpits and chest were numb and tight and the pain was indescribable, particularly the armpit with the swollen lymph nodes. My whole upper torso felt paralyzed and I have this symptom that I cannot describe making me realize why I had avoided compressing my back for decades. It is something I would never want to even encounter lest live with. I thought, I would rather die than live with those symptoms.
In 2011 doctor, after the ACDF surgery I had with you, I found myself screaming when I woke up at the recovery room. I wanted to be given pain medicine immediately because I had unbearable pain! It happens everytime I slept in my back.
What I had done to alleviate my pain for two decades has cost me my credibility. You're the only doctor that I can run to for help, but because of what I did, I feel that you don't believe me. It makes me very sad. There's nothing else I can think about but this. I am frustrated. My EMG's are turning out normal I think because of what I did. But the symptoms are still here with me. I was diagnosed with radiculopathy many times by different doctors over the years. I had an abnormal EMG in 2004 but without acute denervation. The only evidence I have. If I eschewed compression of those nerves the damage could not have gone away. It can only alleviate the symptom unless we believe in miracles and a miracle happened and they all healed! No they didn't doctor. They are still very damaged and they're just lying in wait. Also my medications may be affecting the results of my EMG. Before taking my medicine in the morning, I feel all the symptoms. All the heart stopping pain like my stomach with included 4-5 times morning diarrhea , I can feel the numbness, weakness and stiffness of my chest muscles, it feels like they're going to collapse with dyspnea included, the numbness and seeeaaariiing pain in my feet that makes me want to scream, many other pain and in particular weakness and pain in the arm that shoots up to the sides of my neck and side of my head just to bring up my cup to drink. I have numbness and severe weakness from the root of my arms to my whole chest area down to my hands. All my fingers are extremely painful. Most of them have no more feelings. I do not understand at all how these symptoms are not showing on EMG. Compared to 2004, I have much more severe symptoms now. You can't say I will not be paralyzed after telling me I will experience paralysis in the Spring of 2010 because I have been experiencing paralysis only at a very slow pace. I can assure you that if I had been sleeping on my spine, paralysis would have been complete in no time. My spinal cord has been destroying me since 1995 or shall I say since I was a child. To add to that I have been fighting blindness, difficulty swallowing and talking. You may not believe it but I must be one of the worst cases of someone with such a small syrinx but with so much nerve damage and pain. I couldn't imagine how it would be like if I just allowed my back to be compressed. Even when riding in a car now I have to lay on my side. For five years now, I haven't gone anywhere but to doctor's offices.
In 1998, Syringomyelia has ravaged my whole back that whenever I slept on it I would not be able to move by myself. When my buttocks was compressed, it shuts the circulation on my legs. Even sitting shuts the circulation to my legs. That was the beginning of why I had to avoid sleeping on my back. Whenever I'm in bed and I find it difficult to breathe, I try to recline but when my back is against the bed, it shuts my breathing even more. Then if I tried to get up and sat on the bed, my bottom feels like it's skin and bones, like I'm sitting on a very hard surface and it shuts the circulation to my legs and my feet. My whole back, notably the lower back and back of my legs are extraordinarily painful. This is an old symptom from 1998 that was the reason for my lumbar epidural at that time but same symptom came back just about a week and a half ago.
Please tell me doctor why only parts of my left side was paralyzed when I was sleeping on my left side and now that I have been sleeping on my right side since Nov 2017, my right side is being paralyzed?
If all quadriplegics have or HAVE HAD some kind of hand and finger dysfunction, isn't it enough that my EMG in 2004 showed an abnormal study? Isn't that considered that I HAVE HAD some kind of finger dysfunction? I had finger dysfunction before 1998 but from not sleeping on my spine, the symptoms were diminished but they never healed. In 2009 you said, "You will start to experience paralysis in the Spring of 2010. In 2011, you told me that you didn't think I was going to be paralyzed. Doctor, my body has been ravaged by Syringomyelia since 1998, it doesn't suddenly just go away. I don't think that you should just focus on my EMG now to use as a basis that I won't get paralyzed because I am an anomaly. I did not sleep on my spine for twenty years and that somewhat delayed paralysis but if I decide to sleep on my back now, I can assure you that it will happen in no time. I am getting paralyzed! It is attacking me from every angle. Every part of my body that gets compressed becomes numb. The root of my left thumb, I can't tell where the pain is coming from. Sometimes it's like it's coming from the wrist or the root of the thumb. Then both right and left small and ring fingers are stiff and extremely painful. Also they are very painful to the touch! Shaking them after washing my hands feel like they're going to fall off. Some of my toes feel like they're alive and burning. It's hard to explain the constant pain in some of my toes. It's like a constant squeezing pain or burning pain.
I have been fighting paralysis. I'm loosing the ability to breathe, doctor. This is my life. Please, doctor. I beg you to believe what I'm telling you. I'm not crazy or a stupid person and certainly not hallucinating. You were sent copies of CT's of my chest. So there's air trapping, an indication of small airways disease that is caused by heavy smoking but I'm not even a smoker. My muscles under my breasts are being attacked and are extremely, extremely painful!! It even gives me spasms to my breasts to the tip of my nipples. It's embarrassing but I have to let you know. The pain makes me want to cry!! I don't know what to do, my right pectorales major muscle is being attacked and cannot continue to sleep on my right side. The left one is already stiff and I couldn't go back and sleep on my left side.
I saw a new Ophthalmologist a few days ago and explained to him that I was diagnosed with C2 neuralgia in 2007. I had eye pain since I was 14yo. I couldn't put anything on my face e.g. cream, powder or make up since I was 18. Anything applied on my face would hurt my eyes, turned it red and then I would have very bad migraine. I told him that now, each time the back of my head is compressed, the pain in my eyes gets worse and my vision gets blurry. I asked him what his recommendation was. He responded that he cannot recommend but his common sense tells him not to sleep on the back of the head.
A week and a half ago, pain on the left side of my left hand started. I have been avoiding the use of my left hand because I had been dropping things, breaking plates and glasses, etc. The pain is unreal.
Right now, I have no sensation in most of my fingers, feet and toes although they're extremely painful. Most of their knuckles have arthritis in them. I have spasms in some of my toes. My arms are now very weak especially without medication. The muscles on both sides of my neck are very stiff and numb. My back feels like it has no skin. My back pain is extremely painful like acid is poured all over it and it's burning. My buttocks and back of my legs are extremely painful. (An old symptom that just came back) It feels like I have a lump or a small ball in my throat when swallowing, like having a wound in the front area of my throat that gets irritated when touched by food especially when spicy, when cold, when breathing in cold air, laughing, etc. I cough a lot. I can feel the extreme weakness in my throat and chest area that goes down my arms. I get tired talking. I struggle from breathing especially when there's stress.
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